Monday, November 23, 2009

Last month I wrote Bridge to a 2-Wheeler, outlining our gameplan to get C off his training wheels & onto a 2-wheeler.

He has practiced balance-type exercises so much over the last year or two that I thought it would be possible. He’s sought out 2-wheel and 4-wheel scooters, scooter-boards, curb-walking.. anything and everything that tests his balance. I just thought it was going to take us all winter to get it figured out. Boy, was I wrong!

One of the things about ASD is you learn to celebrate smaller achievements on the way to bigger things. And sometimes things that are so easy for “typical” kids can take years of practice for C. But when he climbs a mountain like this, well… You won’t find a prouder Dad on the planet!

Thursday, October 29, 2009

Calvin has always loved riding trikes and bikes, but his balance isn't the best. He got a big-boy bike for his birthday 3 years ago, with heavy-duty training wheels attached. I've wondered if we'll ever be able to remove his training wheels, but I've also mentally prepared myself that he'll end up getting a 3-wheel bike at some point in the future as he gets bigger.

This year he's been really interested in his scooters - both a 2-wheel Razor and a 4-wheel 'skateboard with a post' type. He's gotten pretty good at them, and last week he even took my regular skateboard for a few pushes without falling down. I decided to give him the benefit of the doubt, and we're going to try like heck this winter to learn to ride a 2-wheeler!

Here's the plan:

We bought this bike-trailer and took it for a spin last weekend. At the beginning of the ride, Calvin leaned so far to the side he almost took us both down! By the end of the ride, 45 minutes later, he was staying upright and we were moving along at a pretty good clip.

I think we can give him some balance/practice on this trailer, then work on using his current bike w/o training wheels. And we've got 6 months of great weather coming up to do it.

Can this trailer be Calvin's bridge to a 2-wheeler? (that and a lot of practice and patience!) I'll post an update in the spring...

Friday, October 9, 2009

This is one of my favorite stories ever. The video is a couple of years old, but a friend just sent it to me again, so I thought I'd share. If this doesn't bring a smile to your day, well... Just watch the video.

Friday, October 2, 2009

Mark Blaxill at AgeofAutism.comwrote an article this week that caught my eye. In fact, it did more than just catch my eye - it blew me away (even though the results shouldn't be too surprising..) Here's the short version...

Research studied 20 young male macaques' development after being vaccinated at birth with a dose of Merck’s Recombivax® hepatitis B vaccine to which a weight-adjusted amount of the ethyl mercury-containing vaccine preservative thimerosal had been added (each dose included 2 micrograms of ethyl mercury as opposed to the human infant dose of 12.5 micrograms). 13 of the primates received the vaccination; 7 received either a placebo or no shot at all.

Over a two week period following birth, the researchers examined the infant macaques daily for their ability to perform nine basic reflexes (four reflexes were tested in two ways, so the paper reports thirteen performance results). Three of nine reflexes showed significant delays in vaccinated macaques while two other reflexes were delayed and “approached significance.” As for the three significant reflexes, vaccinated macaques learned more slowly to: 1) turn their head in response to a brush on the cheek (the root reflex); 2) open their mouth in response to a brush on the forehead (the snout reflex); and 3) suck on a nipple placed in their mouth (the suck reflex).

The article goes on to discuss more about the findings, what the researches want to take away from the study, and what NOT to take from the study. I encourage you to click through to read the full post.

I wrote a long time ago about the difficulty I have in believing ever-stronger vaccinations can be 100% safe, 100% of the time, for 100% of our children, especially when other medicines being developed fall so far short of these numbers. This week that argument gets even stronger..

Monday, August 17, 2009

Life is always a balancing act. Heck, I grew up in a family with 4 kids - our weekends were always filled up with sports, hobbies, and school & extra-curricular activities. Didn't seem like a big deal back then, but today I have no idea how my parents managed to get us to every event on time, let alone stay and watch!

We've always bumped up against this problem with C & J, but balancing the two's activities is becoming more of a challenge as they grow.

Unfortunately, no one has a perfect solution and there's no magic recipe. Just to do the best you can - include the siblings in each other's activities as much as possible, let them learn from each other & learn about each other, and provide parental love, support & encouragement. At least until I can clone myself &/or the kids...

(Steve's article also touches on the challenges of finding help, since a typical baby-sitter probably can't/won't handle the child with autism. - and neither will some family members! But that's a topic for a whole 'nother post..)

Friday, August 7, 2009

Last summer flew by; seemed like we had something fun going on all the time, and Calvin enjoyed the whole season. This summer has dragged a little bit - fewer vacations & getaways, fewer theme parks, and more therapists' vacations. Mix in a change in medicine dosage and a move to a new house, and we're all feeling the pain; the last couple of weeks have been tough.

Fortunately, we might be through the worst of it - the dog days of summer. We've got our strongest therapist back, along with C's favorite hab-worker, and he had a pretty good week. We're looking forward to a weekend at the river, and then the first day of school is just around the corner. (can't come soon enough!)

Wednesday, June 17, 2009

A new study performed by the Université de Montréal and Harvard University and published in the journal Human Brain Mapping shows people with autism were better at problem solving.

The study had participants complete patterns in the Raven's Standard Progressive Metrics test, a test which measures hypothesis testing and problem solving skills. Both groups of participants had equal levels of accuracy, but the autistic group completed the tests 40% faster than the non-autistic group.

A couple of thoughts on the topic:

1. We all know how smart our little dudes are; it's usually just a question of getting it out of them. Give them the right teacher/environment and they'll surpass expectations every time.

Thursday, June 11, 2009

There's an interesting article on Forbes.com entitled "The Extremely Male Brain", discussing Baron-Cohen's theory that autism is an extension of the male brain going to the extreme.

He takes the approach that there are some things males generally do better than females - logic/math/science/compartmentalizing/systemizing, and points out that, taken to the extreme, these are the traits associated with autism.

Over the last 40 years males with these traits have been able to congregate in industries such as computer science and engineering. Then, women who share these traits have joined the same industries. Is it possible that these very-left-brain men are now more easily able to find very-left-brain women to mate with, causing a rise in the number of children with autism?

It's an interesting theory, but it doesn't do much to explain where Calvin came from?!

Friday, June 5, 2009

Calvin has made amazing gains in his communication skills over the years, but he is still essentially non-verbal. Over the years we've offered him as many different communication options as we could find - sign language, pecs, word-cards, yes/no cards, computer keyboards, and "talking machines".

The Vantage by Prentke Romich was his primary form of communicating for a couple of years. This machine was wonderful - a touch-screen computer (without a flip-up lid) that could be carried wherever he went. Calvin would push buttons on the touch-screen and the machine would "talk" for him. As he got better with the machine we would update the screen with more icons, more drill-down choices, and more sentence structuring options.

The downside, if you could even call it that, was its size & weight. It's approximately 10 inches x 6 inches x 2 inches (estimates only as I don't have it in front of me). That's actually pretty small, but it weighs in at several pounds. We've sent quite a few back for repair after being dropped..

The other downside is cost; weighing in at about $7,000 is quite a barrier for many families.

Recently Proloquo2Go developed an app for the iPhone and iPod Touch which turns those devices into "talkers", very similar to Calvin's Vantage. The iTouch might not have 100% of the capability of the Vantage, but considering the cost savings (approx $7,500 less expensive) and the difference in size (fits in any pocket), I would give this a try first!

Friday, May 22, 2009

Forbes.com reported this week that researches found a gene variant which may help explain why boys are diagnosed with autism 4 times as often as girls.

At this point they don't know enough about the gene variant to do much with it, except to focus more energy towards this area.

We always hear about autism described as a puzzle. I think this makes sense - researchers and scientists are trying to put the puzzle together, but they don't even have all the pieces yet. It's like a 1,000 piece puzzle with pieces scattered across the house (or the world); first we need to find all the pieces, and then we need to figure out how to put them together.

Wednesday, April 29, 2009

Yesterday was National Sibling Day, and Calvin was asked in school what he thought about his brother.

I have dear little brother. He is the truest real friend I have. Hope the way we are stays that way. Good having fun with him. He finds me hilarious. His name is Jonas. Having him as a brother has been great.

I couldn't ask for any more between the two of them, and I couldn't have said it any better..

Now, in this particular case, I don't think the police were too far out of line. Thursday night, after midnight, a teenager is walking in the road and doesn't respond to the officers' request that he move to the sidewalk. He then gets belligerent and resists arrest.

The article is a good read. And although the comments are overwhelmingly slanted against the police, I find myself agreening with Comment #6 (Gerald from Belleville) more than the others; at some point the police have a job to do, with protecting the public and enforcing the laws being of primary importance.

Seems to me like this was the culmination of a series of events that could have been prevented...

Maybe our children need to be prepped for how to react if a police officer talks to them..

Maybe they carry a note to give the police officer explaining the situation and asking to call mom/dad..

Maybe they shouldn't be out alone after midnight..

We want to foster independence and protect them at the same time. No different from our NT children, it's just harder!

Wednesday, April 15, 2009

Earlier this week the Environmental Health News reported on a completed study in Minnesota, comparing the rates of autistic children enrolled in schools.

The study compared autism rates among public school children in 46 school districts located within 10 miles of one or more Superfund sites to rates among children within 288 school districts that did not have a site within 10 miles.

Rates of the disorder were one and a half times higher in the districts within 10 miles of the toxic sites. That translates into 1 child in 92 in districts closer to the sites compared to 1 child in 132 in the districts farther away. Schools within a 20-mile radius of Superfund sites had similar autism trends as the schools with 10 miles of the sites.

If you still think heavy metals (mercury, lead, etc.) and other toxins don't matter, it's time to pull your head out of the sand. What we put into our bodies, and into our kids' bodies, directly or indirectly, has an effect on how our bodies perform.

Monday, April 13, 2009

We've been fortunate in a lot of ways. Calvin has made tremendous progress over the last 5 years, so much so that we sometimes take it for granted &/or forget where we came from.

This weekend was a slap in the face reminder. Calvin struggled, a lot. Less control of his body, less direction, more crying (uncontrollably and unconsolably), less sleep, more yelling & whining, more getting into trouble... Overall it was a tough weekend. And of course this was capped off by having family over for Easter..

Family members out there - grandparents, aunts, uncles, brothers, sisters, cousins, good friends.. I hate to say it, but you don't understand. You haven't put a decade of your life into this - every thought, every ounce of emotional & physical strength and energy. You haven't been screamed at and whined at for hours on end, to the point where you don't have a thread of patience left. You haven't poured extra energy on top of everything else hoping (and oftentimes failing) to give support to your spouse & other child(ren).

You love us, and you love Calvin, unconditionally. We know that and we appreciate that (and we love you back). We also know that we, and Calvin, couldn't have a better, more supportive family to lean on. But there are some things only the parents out there can understand...

Parents out there - sometimes your family & friends aren't enough, and you can only get the support you need from another parent. (and sometimes you just need to get out of the house for a couple of hours!)

Friday, April 10, 2009

April is Autism Awarerness Month, and Calvin was asked to write about that at school.

Dena (teacher): "It's Autism Awareness Month. What would you like people to know?"

Calvin:

I would like people to know that autism is so hard to deal with. You have to hope in yourself. Under the real good look hope is hard to find. My body is not home that is the problem. My brain is my home that is where you can find me for the best true me. No one understands my body. The real me is in control in thought. My Calvin is hoping to be free. Most Dena can help to be best teacher to me.

Thursday, April 9, 2009

Joe Steffi is a 23 year old young man with autism, Down Syndrome, and is non-verbal. He's also the owner-operator of Poppin' Joe's Kettle Korn, a thriving small business with a goal of $100,000 in sales.

We talk often about assuming competence, and about how smart Calvin is. But this is a truely inspiring story. It helps me keep faith in what is possible.

Tuesday, April 7, 2009

Today I was eating lunch in my car while parked in a parking lot (a common occurrence when you pretty much work & live out of your car!) A couple of women caught my eye as they approached the car in front of me - mostly because one of them was about 9.5 months pregnant! She looked miserable, and I was running through the "how to deliver a baby" mental checklist just in case...

Anyway, they both got into the car (the expectant mother was the passenger), and got all their stuff organized and ready to go.

I then watched in horror as the driver pulled out a cigarette, lit it, and backed out of the parking space.

All I could think was, Cheryl did everything perfectly by the book while she was pregnant. Yet that baby will probably be just fine...